Tall_Allen4 years ago

You found it in the seminal vesicles. They are squiggly (a technical term! lol) and extremely difficult to biopsy. Salvage HDR brachytherapy (which should be available at UCSF) may be able to get the rest of it. Alternatively, salvage whole gland SBRT is available in a clinical trial at NIH or by Don Feller in San Diego. Here are the options:

pcnrv.blogspot.com/2017/09/...

Before you start on adjuvant ADT, you might wish to ask for a circulating tumor cell analysis from CellSearch. If they find 5 or more, your cancer may be systemic and micrometastatic - in which case, salvage therapy is probably of no benefit.

cesanon in reply to Tall_Allen4 years ago

Wow, tall guy you are an endless found of info.

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Coastguy4 years ago

Thanks Tall - the biopsy was done in Sarasota by an urologist and a R O who specializes in brachytherapy. They took 6 samples in the left seminal vesicle. Hopkins reviewed the biopsy results. The R O then suggested the Feraheme MRI which was negative. What do you think of trying daily 50 mg bicalutamide to see if it reduces my PSA?

Break60 in reply to Coastguy4 years ago

Sounds like Dr Dattoli? He used IMRT on my pelvic lymph nodes and ADT3 plus metformin which have been clear since (2015). If PCa is in SVs it was in prostate . Were SVs hit with proton? If not then why not now?

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charlesmeyers19644 years ago

my best had rising psa for many years they couldn't find it until it was discovered he had a enlarged prostrate. radiate the prostrate and the seminal vesicles and then see what happens or remove the prostrate as will

charlie

407ca4 years ago

My own personal experience is that PSMA PET scans seem to be more accurate. I had an Axumin scan in July 2018 and a PSMA in Oct 2018. Only the PSMA scan found lymph node and bone issues. The Axumin had completely missed them.

Bcgkelly in reply to 407ca4 years ago

Can I ask what your PSA level was when you had the PSMA scan?

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Coastguy in reply to Bcgkelly4 years ago

PSA WAS 10.2. Since biopsy in 11/2017, I continue to have blood in my seamen.

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timotur in reply to Coastguy4 years ago

I have blood in semen too 3 months post biopsy of SV.

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407ca in reply to Bcgkelly4 years ago

It was in the 30 -35 range for both axumin and psma scans.

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Coastguy in reply to 407ca4 years ago

PSA was 9.7 Ga-68PSMA in 9/17; PSA 19.6 Axumin PET in 6/18; PSA 34.8 Axumin PET in 12/18. Investigating 18F-DCFPyLPET/CT at NIH.

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Grumpyswife4 years ago

Could you have another PSMA scan? Seems you are well located for getting one and you already have a baseline from your previous one if I read your history correctly.

Coastguy in reply to Grumpyswife4 years ago

That might be a good option. However, My R O was not willing to do brachytherapy without finding PC in the biopsy.

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Grumpyswife4 years ago

My husband’s brachytherapy guy Dr. Gordon Grado of Scottsdale AZ would not do brachy until he had biopsy confirmation as well. I thought it was a state law or maybe required for insurance coverage.

It took two biopsies in a row done st the University of Minnesota by a urologist who was supposedly well skilled. A certain technique that was suggested by Dr. Grado accomplished getting a positive core. That suggestion came in a sealed envelope and the surgeon’s nurse was somewhat insulted by it all.

Brachy did not Work for him.

Coastguy in reply to Grumpyswife4 years ago

Thank you for the reply. From the beginning my urologist in Eugene Or. was trying to avoid hormones if possible. Before the negative results of the biopsy, my R O wanted me to start Casodex for a month, then 6 weeks of IMRT followed by brachytherapy to the seminal vesicle. While waiting for the results of the biopsy, I went to Florida Hospital in Orlando to get a second opinion from a R O to do SBRT. Once receiving the biopsy results, he suggested doing the Axumin Scan. What treatment is your husband doing now?

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Grumpyswife4 years ago

Half dose Xtandi since 2/18 after having Provenge 9/17.

Could Provenge now help you in the future? That treatment had no side effects and was fairly painless.

First though TA has good advice to stage where you are at in terms of metastatic or not. More biopsies may never find it and cause more trouble.

Coastguy4 years ago

Thanks mjbach - had he been on Lupron and Casodex before Provence and Xtandi? Was it hard to get approved by your insurance?

Grumpyswife in reply to Coastguy4 years ago

Yes he was on Lupron which didn’t work well so Casodex was added up to 150 mg. That combo brought PSA down some but there was disagreement among docs on using 150 mg due to risks. That’s when he had Provenge.

We relocated right after Provenge and new doc stopped Casodex abruptly and started xtandi. Husband assumed castrate resistant. He avoided hormones for 15 years of 18 yr diagnosis. He was already impotent from daVinci LRP (liars) but did not want SEs of hormones.

Provenge was entirely covered by Medicare no problem. It works “magically” and one has to have faith that it’s working behind the scene as there is no measurement. You have to find a doctor who’s a believer, too.

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Sxrxrnr14 years ago

C11 acetate scan by Phoenix Molecular is still considered by many the gold standard for detection of previously undetectable metastasis. I personally know a number of men who swear by this clinic.

Medicare does not pay however.

paact.help/update-c11-aceta...

Contact info at bottom of the report

Kimmilemo in reply to Sxrxrnr14 years ago

Doesn’t mayo do C11?

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cesanon in reply to Kimmilemo4 years ago

Mayo does c11 choline. It is pretty much the same scan.

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Sxrxrnr1 in reply to Kimmilemo4 years ago

My local friends suggest that Acetate is superior to Choline. Much depends on expertise of analysis by Radiologist and that Dr. Almeida of Phoenix Molecular is among if not the best in the country. I have no personal experience with either. Likely comparative info can be found on the web. I do believe that choline may have Medicare coverage.

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richlisad4 years ago

Thanks for sharing your information Coastguy. Who is the MO you are seeing at OHSU? And do you recommend them or any other specific people at OHSU?

I have an appointment with Hilary Shreves on 4/15. PSA jumped to 0.7 after 2 tests of <0.01 following RP last August at OHSU. Just starting to find out who I should be talking to.

Coastguy in reply to richlisad4 years ago

My MO is Julie Graff but the top MO Is Thomaz Beer. Dr Graff was able to see me before I was flying out of Portland.

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richlisad4 years ago

Thank you. Tons of help from everyone on here. Appreciate your input.